Voice Aerobics DVD Helps Strengthen Voice in Parkinson's, PSP, and Related Disorders

Patient's Insurance Provider Does Not Consider Communication An Essential Activity Of Daily Living

noreply@blogger.com (Mary Spremulli, CCC-SLP) — Thu, 23 Feb 2012 00:28:00 +0000

Today I evaluated a gentleman who is 8 months post stroke and with persistent aphasia. Despite his understanding of language, and prior speech and language therapy elsewhere, his speech remains severely impaired, limiting his ability to communicate with his spouse or others in his day to day life. My goal today was to evaluate his ability to benefit from and use a speech generating device (SGD). A speech generating device typically uses some combination of pictures and words and has voice output in a naturalistic voice serving as a substitute for the patient's own voice. SGD's are speech aids that provide individuals with severe speech impairment the ability to meet their functional speaking needs. Today's evaluation results indicate that the patient has the interest, ability, and desire to benefit from obtaining and training in use of an SGD. The patient and his wife were nearly in tears as I shared my findings and recommendations with them.

As many insurance plans have a specific contractual exclusion of communication aids, with his being no exception, I am now gearing up for a fight with his insurance provider.

His specific provider, who for the moment shall remain anonymous, states rather clearly in their policy guidelines: the DME ( durable medical equipment) benefit "covers medical or surgical equipment for treatment of disease or injury, or to enable the person to perform essential activities of daily living related to the patient's health and hygiene." The patient's insurance provider does not consider communication to be a bodily function, and although considered an activity of daily living, it is said not to be related to the patient's health and hygiene.

So, in other words, a bed, wheelchair, or commode will be provided for, but, a communication device that meets a human beings most essential need may be denied, as it is not considered an essential medical device.

Nearly everything we do in life depends on our ability to successfully communicate. That means hearing and speaking to others. How and why, therefore, I wonder, did it happen that meeting the needs of persons with communication impairments has been relegated some secondary place in our health care payment system?

This Too Is Good...

noreply@blogger.com (Mary Spremulli, CCC-SLP) — Fri, 17 Feb 2012 14:54:00 +0000

A friend sent me an uplifting message today taken from the Joyful Springer:

"We live in a physical world, and it’s easy to get so caught up in it that we forget that it is just a tiny fraction of reality. True reality, the reality that encompasses everything, is an unseen one, an intelligence that connects all things.

Joyful Springers are alert to the mystical. When life feels overwhelming or difficult, they remind themselves that under the physical circumstances is spiritual meaning that can lead them through the tough times to better ones.
Just because you can’t see it doesn’t mean it isn’t real. The power that created worlds flows through you and around you. When you’re aware of it, you will find far more joy and beauty in your life."

I try to always honor the spirit of the individuals I work with despite the emphasis on the physical symptoms. With true reciprocity these days, my patients have honored my spirit with kind words of support. At times in my life when I have felt burdened by difficulty, I have uttered the following affirmation:

This too is good, this too is God, and I demand to see the blessing in it...

Whatever any of us may be struggling with in our lives, I hope we can find comfort in a belief that we are always guided to right thought and action if we quiet the chatter in our own mind and listen.

A Simple Communication Board Can Help Following Aphasia

noreply@blogger.com (Mary Spremulli, CCC-SLP) — Wed, 15 Feb 2012 17:30:00 +0000

This past Saturday I visited my mother who was on day 40 of an unexpected and tumultuous acute care hospital stay. When I last saw her, she was less than 24 hours post stroke, and In the nine days since my return she had regained near normal function of her right arm and leg. While rapid recovery of motor function gives reason to be happy, her persistent expressive aphasia ( aphasia is difficulty with speaking or understanding language) has created frustration for her and for us as she attempts to communicate with family and hospital personnel. And, despite a **Joint Commission standard that states that a patient’s communication needs must be met, in the 9 days post stroke, no speech therapy intervention had been offered which might have helped to establish my mother’s communication abilities and decisional capacity. (The latter being especially relevant as we had scheduled a meeting to clarify my mother’s preferences regarding continued care. )
On Saturday, I introduced my mother to a simple communication board containing words and pictures. Adding to that, I had written down some personal information, including family member’s names. Quickly I was able to validate my family’s observation that her understanding of language was quite good, and despite the limitations of the available vocabulary, my mother quickly accessed the communication board , which was now secured to her hospital bed . Although communication with my mother is now a combination of pictionary, charades and twenty questions, communicate we have. We have clarified Advance Directives, answered my mother’s questions about the long hospital stay, and provided her an immediate way to request basic needs.
Two days ago, my mother was transferred to a rehabilitation facility. A new setting, unfamiliar people, and my mother’s limited ability to speak, has created a renewed anxiety in me. I have already had to clarify her first name which was listed in error on some records, facilitated her ability to respond to a “memory test”, a facility requirement, and a nearly impossible task for someone with aphasia, and we have waited, together, for a response to her call light. As I prepare to leave for a return home, I wonder and worry if her unpredictable and limited speech will serve her when I am not at the bedside to interpret.
The inability to effectively communicate occurs for many hospitalized patients, including those on ventilators, those with tracheostomy, and those with progressive loss of speech from neurogenic conditions such as ALS. If you are a family member of such a patient, and the patient has not yet been evaluated by a speech language pathologist, demand it from their physician. Of course, my recognition of the power and importance of communication has been the driving passion for what I have done professionally for the last 30 years, yet, there is still no preparation, it seems for the reality of seeing a family member’s vulnerability due to loss of speech.

** The Joint Commission is the accrediting agency for hospitals and other health care settings and annually establishes policies to guide standards of care including patient safety, and includes a requirement for meeting a patient’s communication needs. Please visit their website to learn more:http://www.jointcommission.org/

Aphasia Is Now An Unwelcome Visitor To My Life

noreply@blogger.com (Mary Spremulli, CCC-SLP) — Fri, 10 Feb 2012 01:25:00 +0000

On February 2, my mother suffered a stroke. (cerebral vascular accident/CVA). This came on day 27 of a long, protracted, and unexpected hospitalization. Her problem list was already rather complicated, and when I spent the week with her prior to the CVA, I was saddened and struck by how frail and weak she had become. The result of surgery, numerous medical procedures and immobility.
The stroke occurred one week ago on Thursday evening, and by Saturday, she had begun to have return of motor function on her right side, but she still could not speak. I returned to my home in Florida , and despite the celebratory mood of my family, I feared the worse, and that was that speech and language would be remain impaired.
Presently, my mother has expressive aphasia, which means she seems to understand language but is unable to speak. The young medical residents's suggestion that "maybe she could write," reminded me of how little doctors learn in medical school about language disorders from stroke or other neurogenic conditions. Because we communicate through many language modalities, speaking, writing, reading, it is frequently the case that when spoken language is impaired, written language is similarly impaired.
Prior to the stroke, I phoned my mom daily, asking how she was feeling, re-assuring her that she was getting better, and optimistically ( if not cautiously) talking about a plan for discharge. Now, the silence on the other end of the phone, except for the very slightest vocalization, creates a void in my experience and a heaviness in my chest.
If you believe as I do that the ability to speak and communicate is one of our greatest human gifts, than aphasia is certainly a cruel thief.
More than 100,000 people acquire aphasia each year, most from stroke. To better understand aphasia and to and learn how you might help someone who has had a recent stroke, please visit: www.aphasia.org

"I don't have a good feeling about this"...

noreply@blogger.com (Mary Spremulli, CCC-SLP) — Thu, 26 Jan 2012 01:06:00 +0000

The statement above is one we have probably all uttered at one time or another in our lives. It is a statement born out of intuition and a feeling state that cautions us against a particular course of action. The opposite statement: "I feel great about this," is that rare certainty we have at times in our lives about a decision preceding some event or action. In both instances, intuition, that elusive something, a feeling in our "gut" allows us to know something without the benefit of analytic reasoning.

When intuition presents itself into our health consciousness as patients, it can be thought of as that innate intelligence we seem capable of as human beings to "know" when something is right or wrong with our bodies. Carried to the extreme with a focus on every bodily feeling, it might lead to hypochondria. Carried to the other extreme, however, and dismissed, it might lead to denial of symptoms and a delay in treatment. Health care providers (HCP) may also have strong intuition, a "hunch" about a diagnosis or treatment approach that comes about as a merging of years of clinical practice, good listening skills, reflection, and the ability to probe and ask the right questions of patients.

Last week I evaluated a patient for the first time. She has a paralyzed vocal fold resulting from a surgery performed 3 months ago. When she raised a concern shortly after the surgery, saying "I knew something wasn't right," she was advised that there was nothing to worry about, and that her voice problem would resolve. However, it did not resolve, and nor did her own nagging feeling that something was wrong. At least three times during our interview, she stated: "I know my body." Her self "knowing" is especially relevant, as she now is angry about her prolonged problem, and the original physician may find himself in a litigious position because of his poor response in dealing with the patient's complaints.

Other patients, while undergoing speech therapy, often talk about symptoms and feelings they are having in response to medications. These symptoms can vary from day to day and within a day, and as such, I always encourage them to record those feelings. A calender with notations or a small diary may provide their physician with the sort of objective data they are more accustomed to, and create an environment for discussion to explore the symptoms further.

Intuition can sometimes get a bad rap in western medicine which often places a high value on diagnostic tests and clinical procedures. But, at the heart of both of the two scenarios described above, is a need for patients ( all persons) to be understood. We all wish to have our feelings, ideas, and concerns given validation. Patients need to be able to communicate effectively to their health care providers, and by empathic listening to patients, health care providers may better understand and uncover the physical and emotional causes of a particular symptom or symptoms.

Communication Impairments Can Limit Participation In Life Situations

noreply@blogger.com (Mary Spremulli, CCC-SLP) — Thu, 19 Jan 2012 16:15:00 +0000

A friend of mine with Parkinson's Disease, recently asked: Is there any research on the anxiety in PD and how if affects PWP's speech and voice? I notice the negative thinking that I experience when people repeatedly ask me to repeat ("oh no, it's happening again") which results in me either trying to shout even more loudly or clam up and end the conversation prematurely.
Last year's movie, The King's Speech, brought to light the difficulty an individual may experience in personal and social relationships when faced with a speech impairment. In fact, during the period of time the movie was showing, nearly all of my patients commented on being able to "relate" to the central character, and his daily struggle to communicate. Whether the communication difficulty is the result of a stroke, Parkinson's disease, head and neck cancer, or any other medical or neurogenic problem, it is tempting for many persons to choose to withdraw from social situations.

This tendency, in fact was reported in an excellent article published last year: A Qualitative Study of Interference With Communicative Participation Across Communication Disorders in Adults (Carolyn Baylor, Michael Burns, Tanya Eadie,Deanna Britton, and Kathryn Yorkstona.Am J Speech Lang Pathol 2011). The researchers sought to identify the ways that a communication impairment interferes with participation in life activities. Analysis of interviews with 44 individuals with communication impairments associated with a variety of medical diagnosis, revealed several prominent themes. One common theme that emerged from the study was that: Interference in communicative participation in life activities is both “functional” and “emotional.” Functional, refers to not being able to do a particular task, for example successfully make a phone call due to a speech impairment. Emotional interference had more to do with how the individual felt, with comments such as: "I felt like a bystander," "I lean on my family and friends to communicate for me." Several participants reported that over time they adopted strategies such as: "keeping a low profile,"do the bare amount of talking," "retreat into the background,"and "avoid unnecessary conversation."

The coping "strategies" noted above are commonly reported by many of my own patients, along with their reports of frustration due to the unpredictable nature of their speech or voice problem. Speech can fluctuate from day to day as well as in different settings. Situations that impose communication "pressure" for most speakers ( eg: being at the doctor's office, standing in line at the store,talking with the background noise of a restaurant) can elicit anxiety for individuals with a speech problem, and an anticipatory response that can momentarily worsen the problem.

As a society, we have finally taken some measures to accommodate persons with physical disabilities, by way of ramps, parking spaces, and bathroom stalls. Communication impairments, on the other hand, are less visible, and consequently not often acknowledged by health care professionals much less the general population, leaving individuals struggling or suffering in isolation.

If you have a communication problem, then improving or maintaining communicative participation in life activities needs to be a goal of not only your therapy programs, but also part of discussions with your neurologist or treating physicians as well as family members. In a future blog post, I will try to offer some suggestions for staying communicatively independent and engaged in life.
My Mission: To enlist individuals in their treatment, and help them express their personality & spirit through voice. To educate and empower.

How Do We Care For Our Parents and Honor Their Journey?

noreply@blogger.com (Mary Spremulli, CCC-SLP) — Fri, 13 Jan 2012 18:18:00 +0000

I am writing this post from the dining room table of my mother's home, in Cleveland, where it has been snowing all morning. The weather change is one of the many shocks to my system this week. An unexpected call from my older brother last week, two days before I was to leave on an educational cruise with the Parkinson's Research Foundation, has turned my life a bit upside down . My mother successfully went through surgery earlier in the week to remove a malignant mass from her colon, and, having been declared "cancer free" by her physician, we are now, as a family, trying to figure out how to make her discharge from the hospital a safe one. As my brothers and I discuss options, she is already, stubbornly refusing to consider any plan other than her own, which includes returning to her own home, where she lives alone.

Even though I have spent the last 20 years in SW Florida interacting with my own patients, mostly older men and women, counseling them about the best and safest course of action when disease or illness has been interjected into their life, it is quite different when you are advising your own parent. Apparently, it is also different when advice come from your own children. So, currently my mother is stubbornly adhering to some autonomous choices, that in our opinion are laden with potential risks. We warn, caution, and threaten in much the same way a parent speaks to their teenage children about poor choices, and still, my mother resists.

As, I try to process the array of emotions and thoughts this week has ushered in, I am now also contemplating how to possibly honor my mother's life journey, set healthy boundaries, and keep her out of harm's way. I have been surprised this week how many friends and even strangers on the plane have been so ready to share their own stories about caring for their parents, and I realize how much this process is a part of our shared humanity.

I am a little scared about what the coming weeks and months have in store for my mom and for us as a family, but, my own decisions will be guided by a faith I have in the universe to guide and support us all to right action. This morning, while going through some boxes in my mother's basement, I came upon a book, I read many years ago: Love is Letting Go of Fear. I have already earmarked one of the pages, which states: Other people do not have to change for us to experience peace of mind. I can already see that 2012 is going to bring some new lessons into my life.

Are You A Speech Therapy "Dropout"?

noreply@blogger.com (Mary Spremulli, CCC-SLP) — Mon, 02 Jan 2012 21:51:00 +0000

From time to time at conferences, and in my own practice, I meet a person with speech and voice changes from Parkinson's Disease who tell me that they "dropped out" of prior speech therapy. When I probe their reasons for discontinuing therapy, they include comments such as: "I wasn't progressing," "I didn't like the approach," "I felt embarrassed," "the therapist didn't think it was helping."

Other patients may complete a course of speech therapy, but then fail to continue the home practice necessary to maintain the improvements, and in a few months time be struggling once again to be communicating effectively. In both instances, individuals often talk about these "failures" with a sense of embarrassment or shame, as if they lacked the necessary willpower or skills to complete or maintain the recommended course of treatment. Since many of these individuals are also dependent in some way on other people ( spouses or other family members) for help with transportation to and from therapy, they may feel they have let others down, adding another layer of guilt.

If you, too, have attempted speech therapy and "dropped out," but communication is still an important goal, I encourage you to consider re-enrolling in speech therapy. In doing so, it is important for you to recognize that inherent in every effort to complete a program of behavioral change are failures, setbacks and backslides. Think of the number of people you may know who have repeatedly tried to undertake a weight loss diet, or another health regimen.

The inability to complete a program or the failure to maintain improvements through the necessary home practice is an obstacle for most patients dealing with problems from a chronic disease.Talking openly with your therapist about what you liked and did not like about previous treatment, or what the obstacles are for you to practice effectively on your own, can help you be successful as you undertake another course of treatment.

Patients are not all alike. This is a statement I make over and over again, and while appropriate treatment for your speech and voice impairment needs to address the underlying physiology and reflect current information from the research, Successful treatment will include whatever it takes to help you to reach your goals.

If something you are being asked to do in therapy "doesn't feel right" , then it may not be right for you. Develop realistic goals that are based on what you want, and what you can do.

The New Year seems to be the time of year when many of us establish new goals. Setting goals for the future cannot be mired in past experiences of failure. So, as you think about how you might develop some better communication skills this year, write down a few of your own goals. Goals that are:

Specific ( Think about what behavior/s you wish to change or improve)
Realistic and potentially achievable ( Can you do this?)
Measureable ( How will you know that you are speaking better?)
Lead to some meaningful reward for you ( How will people respond to you? How will you feel about yourself? )

Good Luck and Happy and Healthy New Year!

What Is Your Communication Quotient? (CQ)

noreply@blogger.com (Mary Spremulli, CCC-SLP) — Wed, 28 Dec 2011 13:39:00 +0000

If you have been newly diagnosed with Parkinson's Disease or a related diagnosis, you are undoubtedly trying to wrap your head around the diagnosis, understand new medication regimens and follow your physician's recommendations to exercise. Your physician may have also recommended that you consult with a speech-language pathologist/therapist for management of speech and swallowing symptoms that may be associated with your medical diagnosis. This may seem like a reasonable recommendation or an unnecessary one depending on your own perception of your speech and voice.

Below is a quick questionnaire that may help you determine if you might benefit from some speech and voice therapy or coaching.

Circle the response that best matches your experience.
0= never 1= almost never 2= sometimes 3= almost always 4= always

I breathe from my abdomen/diaphragm 01234
I can speak without worrying about drooling or coughing 01234
I use the appropriate volume for the situation 01234
I speak clearly and others comment on this 01234
I project my voice without effort 01234
I use my voice and body language to express energy 01234
I open my mouth sufficiently when I speak 01234
I feel confident speaking on the phone 01234
I am confident speaking in groups and in new situations 01234
I speak for myself and rarely let others do my talking 01234

How did you do? If you got mostly 3's and 4's, you may be communicating fine without much disease impact on your speech and voice. If you got mostly 0's, 1's, and 2's, speech and voice therapy might be a worthwhile investment in the New Year.

Twelve Days of Speech Therapy...will Medicare pay for this?

noreply@blogger.com (Mary Spremulli, CCC-SLP) — Sat, 17 Dec 2011 17:28:00 +0000

On the first day of therapy my patient said to me: will Medicare pay for my speech therapy?

On the second day of therapy my patient said to me: I know I need to practice, but, will Medicare pay for my speech therapy?

On the third day of therapy my patient said to me: I think I've stopped choking, I have been practicing, but, will Medicare pay for my speech therapy?

On the fourth day of therapy my patient said to me: I am talking louder, I have stopped choking, but will Medicare pay for my speech therapy?

On the fifth day of therapy my patient said to me: no more thickened liquids, I have stopped choking, and I practice every day, did you get my Medicare EOB?

On the sixth day of therapy, my patient said to me: I am talking better, no more thickened liquids, I have no more choking,every day I practice, but I worry they will not fund my speech therapy?

On the seventh day of therapy my patient said to me: I'm so grateful for speech therapy...I am talking better, and no choking do I see, can you tell me if they paid for my speech therapy?

On the eighth day of therapy my spouse didn't say:"REPEAT".
I am feeling grateful, I am talking better, no more  thickened liquids, no choking when I'm eating, can't they see I need this? Please don't take away my speech therapy.

On the ninth day of therapy my patient said to me: Why can't congress understand the need?

I am one of millions who can't talk or swallow with ease, that is why we need our speech therapy.

On the tenth day of therapy my patient said to me: my doctor, friends and family all agree...

I am talking better , eating with less impact of disease, I am living proof in the value of speech therapy.

On the eleventh day of therapy my patient said to me: finally I feel free...

No more tubes or thickeners , I can eat much more safely, note to Congress don't slash my speech therapy.

On the twelfth day of therapy my patient said to me: I will pray for others who are in need...

Medicare assisted me in my efforts to succeed,
Santa don't let Congress ruin this, pretty please.

Happy Holidays, Peace on Earth, and Good Health

Mary Spremulli,MA,CCC-SLP

Why Not Try Some Weight Lifting For The Breathing Muscles?

noreply@blogger.com (Mary Spremulli, CCC-SLP) — Fri, 09 Dec 2011 00:22:00 +0000

Respiratory muscle training may not have been a part of your training program in the past, but that may change as you read on.

What is RRMST? Resistive Respiratory muscle trainers are hand held devices designed to strengthen the muscles of inspiration and expiration. These portable devices are easy to use and beneficial for anyone interested in developing power and endurance of their breathing muscles.

How Does it Differ From Incentive Spirometry? Following surgery or hospitalization for an upper respiratory infection, patients are often given an incentive spirometer. These devices are designed to help you to take a deep breath, but you are not working the muscles against resistance, and they are designed for inspiration only. You might find it useful to use your spirometer to measure the progress of your respiratory muscle training.

Why Add Respiratory Muscle Strength Training To Your Workout? The respiratory system was built for exercise, and yet, the respiratory muscles are often taken for granted. Respiratory muscles are the muscles responsible for filling and emptying your lungs, and like the skeletal muscles, the respiratory muscles can be strengthened with exercise. In a 1998 study looking at the effect of respiratory muscle exercise using a resistive device called a BREATHER®, [1]investigators found that respiratory training increased breathing efficiency and exercise performance.

Who Could Benefit From Respiratory Muscle Strength Training? Healthy individuals and athletes could benefit from exercising the respiratory muscles, as well as elderly persons and individuals with pulmonary and neuromuscular diseases. With age, physical function declines, which influences the respiratory muscles, and just as other muscle groups within our body can become weaker the respiratory muscles also lose strength. Recent research has begun to examine the benefit of respiratory muscle training for persons with neuromuscular and neurogenic diseases such as Parkinson’s Disease and Multiple Sclerosis. [2],[3]

How Can Strengthening The Breathing Muscles Help Voice And Swallowing? Patients are sometimes surprised when I suggest that resistive respiratory muscle training be added to their voice or swallowing exercise regimen. Respiration, phonation (voice), and swallowing are all interrelated functions and highly dependent on muscle strength, coordination, and accurate timing of breathing and swallowing. Since we are always using the breath out (exhalation) for speaking, interrupting exhalation to swallow, and using the muscles of exhalation for cough effort and airway protection, it makes sense that strengthening the muscles of inhalation and exhalation may help one to: swallow at higher lung volumes, better time breathing and swallowing, improve cough effort, and use better diaphragmatic breath support for voice.

[1] Medicine and Science in Sports and Exercise, 1998, Vol. 30, No 7, pp -1169-1172.

[2] Archives of Physical Medicine and Rehabilitation 2003. Jul;84 (7): 994-9. Effects of inspiratory muscle training in persons with Multiple Sclerosis.

[3] Can J Neurol Sci. 2005 May;32(2):213-7 Inspiratory muscle training and the perception of dyspnea in Parkinson's disease

View video: http://www.youtube.com/user/voiceaerobics#p/u/0/ie2a2cYFrb0

Can I Help My Patients By Just Listening ?

noreply@blogger.com (Mary Spremulli, CCC-SLP) — Fri, 02 Dec 2011 12:35:00 +0000

I have adopted a new personal mantra: "I am minding my own business". Mantras are said to create thought energy waves, and also to free the mind, directing our intentions. Why these particular words, you might be wondering?

I recently realized how often I am advising, offering opinions, gossiping by joining into a conversation about another person or situation, or chattering in my own brain about someone or something. All of these activities, I realize distract me from my own life and my own personal and business goals. Simply put, when I am engaged in someone else's drama, I am squandering the few precious minutes I have in any given day to tend to my own business.

This tendency to counsel and advise, of course is an occupational hazard, as I spend much of my working day doing just that. Patients, after all, are looking to me for help, and often that help involves teaching, training, and instructing. But, as I am trying to embrace the intent of this new mantra, I wonder if even with patients, I need to listen more and talk less. Now, this would be quite a change for me. Silently listening as someone tells me their problems makes me feels uncomfortable. " I should be responding", I think, offering solutions, re-assuring that I can help. But, perhaps, I need to just be listening.

What a patient understands about their particular problem, the impact their communication impairment is having on them or their family, and what they hope to gain from treatment, may all be revealed, if I listen. Using probing words, like: "say more about that," "tell me more," "what did you mean when you said,"...and so on, may help to uncover the patient's own strengths and weaknesses that will impact success in therapy.

One of the frequent dynamics I often observe when an individual has a communication impairment, is that others will begin to speak on their behalf. Usually this is a spouse, adult child, or well intentioned caregiver. While at first glance, this might appear to ease the communication frustration of the individual, in reality, it begins to obscure the reason the person has sought out therapy, and limits their opportunity to take ownership of their problem and solutions. So, at times, even the most well intentioned spouse or caregiver must also learn to mind their own business, and allow the individual to fully engage actively in their own treatment.

In learning to be a better listener, I have identified 5 action steps:

1. Not to interrupt
2. Not to finish another person's thought
3. Not to personalize a situation to me
4. Not to participate in gossip
5. Not to offer unsolicited advise

If you are a professional, spouse, friend, or caregiver who also talks more than you listen, perhaps you would like to join me on this challenge.

Lewy Body Disease Requires Creative Treatment Approaches

noreply@blogger.com (Mary Spremulli, CCC-SLP) — Sun, 20 Nov 2011 20:35:00 +0000

Lewy Body Disease (LBD )is not a rare disease, and in fact, it affects an estimated 1.3 million individuals and their families in the United States. Because symptoms can initially mimic other diseases like Alzheimers and Parkinson's, it can sometimes be awhile before patients are accurately diagnosed. (Source: LewyBody BodyDementiaAssociation)
http://www.lbda.org/category/3437/what-is-lbd.htm)

Lewy Body Dementia, is a type of dementia that can accompany a movement disorder like Parkinson's. When LBD is associated with a movement disorder, patients may begin to experience a decline in speech and swallowing which can impact day to day communication and safety during eating and drinking. When these patients are referred for speech and swallowing treatment, they can be a challenge for therapists, and the patient's memory difficulties, anxiety, and variable and unpredictable overall day to day behavior can limit their ability to participate in traditional treatment.

Incorporating treatment methods which reduce memory burden, such as pre-recorded and guided programs available to the patient at home and at any time, may provide the best opportunity for daily practice, while at the same time help to reduce caregiver burden.

Over the last year, I have worked with several patients with LBD, and I have found success with utilizing video-feedback as a means of providing ongoing coaching and cueing for the patient. Below is a brief case study of a recent patient who has benefited from this type of home practice. He has graciously allowed me to also share a video clip:

Case study: Elwin is a retired school teacher who had been previously diagnosed with Parkinson's and more recently, LBD, with symptoms that include decline in speech and swallowing . Our initial visit was in an outpatient clinic setting, but because he easily became anxious, we decided to move the remaining visits to his home. In addition to his speech and swallowing problems, he has been steadily losing his vision and this vision loss and its subsequent challenges are a large trigger for his anxiety and focus of conversation. His visual impairment also limits his ability to benefit from activities which require written instructions.

Elwin was seen for six hour long visits, and at each visit, a video recording was made of him performing prescribed swallowing and speech exercises . None of the video recordings was longer than 12 minutes, and all were downloaded to his home computer. Once downloaded, he required only that his spouse turn on the computer and click on the video. Once started, he required no further instruction from me or his wife. He has been encouraged to complete his swallowing exercises, which include respiratory muscle training, at least one time daily, and also to complete one of his voice practice tapes daily.

Given his diagnosis, it is unknown whether this daily practice will substantially improve function, but, it is hoped that it will reduce the rate of symptom progression and improve quality of life for him and his spouse. Periodic review of the home program at intervals of 6 months was suggested.

Watch Elwin here:

Parkinson's and Swallowing Safety: What's Falling Got To Do With It?

noreply@blogger.com (Mary Spremulli, CCC-SLP) — Thu, 17 Nov 2011 15:56:00 +0000

I recently attended a local Parkinson's Symposium that included presentations by two neurologists. The focus of the day was on the neuroprotective benefit of exercise and PD. It was noted by one of the neurologist, that exercise was particularly important for reducing decline in balance and cognition, citing those as the two biggest problems facing persons with Parkinson's Disease (PD).

Now, with due respect to the neurologists, and with admission of my bias, I would rank decline in speech and swallowing as being right up there as one of the ULTIMATE challenges for most people living with Parkinson's and related disorders. And unfortunately, with no mention of this to the audience, this error of omission became a missed opportunity for participants to be educated about the importance of early exercise for the whole body, including the respiratory, speech and swallowing systems.

There is some recent research, in fact, indicating that postural instability and cognitive decline may have a strong correlation with decline in swallowing function. ( Dysphagia. 2011 Mar;26(1):92-6.)

Walker, et al reported that although many people with Parkinson's disease (PD) experience dysphagia (swallowing problems) , the prevalence of dysphagia in people with PD is unknown. Therefore the intent of their research was to examine this further by studying a prevalent population of PD cases. Anyone who answered "yes" to either one of the two questions: Do you have difficulty swallowing food/liquid or tablets? and Do you cough after eating/drinking? was considered to have dysphagia. Question 7 of the Unified Parkinson's Disease Rating Scale (UPDRS) was also used to identify dysphagia. Almost one third of study participants reported dysphagia, and there were significant correlations with cognitive function, anxiety, depression, quality of life, and UPDRS-reported gait disturbance, postural instability and problems with falling. There was no correlation with disease duration, age, or gender.

As I read these study findings, they speak again to that somewhat "sneaky" or insidious nature of Parkinson's I often refer to when speaking to patient groups. A disease which lurks in the background, changing the way muscles are working, even before full blown symptoms are present, and this includes speech and swallowing.

Please don't wait for your neurologist to consider a referral to a speech pathologist. Regardless of how long it has been since your diagnosis of Parkinson', if you have not already had a consult with a speech pathologist, request one. Learn some voice and swallowing exercises that can be incorporated into your general exercise program as one more step to reduce the impact of Parkinson's on your quality of life.

Parkinson's and Your Voice: Get High!

noreply@blogger.com (Mary Spremulli, CCC-SLP) — Fri, 11 Nov 2011 13:21:00 +0000

A recent pilot, prospective study was published in AJSLP ( American Journal of Speech-Language Pathology, November 2011), examining the relationship between pitch elevation measurements and swallow parameters in individuals with known swallowing difficulties. The study was the first to document some relationship between pitch elevation and swallowing safety, and although pitch elevation alone may not always predict the likelihood of a swallowing problem, this early research suggests that examining pitch may be a useful tool.

Patients who complete the Lee Silverman Voice Treatment (R) program are introduced to vocal glides, and participants in Voice Aerobics (TM) classes are also introduced to vocal glides, with the addition of arm movements. Vocal glides help to elevate the larynx and lengthen the vocal folds with resultant elevation in pitch.

This particular voice and swallowing exercise points to the complex interrelationship of the mechanisms of respiration, voice, and swallowing, and reinforces the notion that strengthening one component of the system may have a beneficial effect on the whole.

So, if you are not already completing vocal glides as a a part of your daily voice practice, why not begin now. They don't take much time, and coupling them with movement may create an opportunity to use other muscles in your body as well.

If you would like to join a Voice Aerobics class in performing some vocal glides, click on the YouTube link below:

http://youtu.be/RJN743sEa5w

Dear Blue Cross: Please Answer Your Phone!

noreply@blogger.com (Mary Spremulli, CCC-SLP) — Wed, 09 Nov 2011 13:52:00 +0000

Despite the promise of a beautiful fall day yesterday which included sunshine and cooler Florida temperatures, my morning quickly turned sour after spending 20 minutes on Blue Cross's automated customer service line . An attempt to check a patient's eligibility for speech services got sabotaged when the automated voice on the other end of the phone was unable to understand my responses. Despite multiple repetitions by me and a rising level of voice that sent the dog hiding under the bed, the calm robot on the other end of the line, just repeated her line of questioning.

I'm sure you all know the routine, what starts off as a friendly conversation between you and a robotic voice quickly turns bad as she asks you repeatedly for some information that she seems unable to quite understand. For example, she asks for the patient ID number, and I say a series of numbers: "8357," the robot voice asks: "did you say: "H377?" "No," I say calmly the first time, repeating the patient's ID numbers "I said: 8377" "I'm sorry, she calmly replies, I'm having trouble understanding you, did you say: "8B77?" "NO," I respond, and it goes on several more rounds. When I attempt to escape the voicemail system with a touch on "0", I am firmly told by the robot: " you will be unable to speak to a representative until you have responded to all the questions." My responses now turn to pleas and expletives that only serve to confuse the robot further, causing her to eventually say: "I'm sorry, please call your local Blue Cross representative, good bye."

Angry, helpless, and frustrated... are just a few of the words to describe how I felt when the call was terminated. Afterward, I wondered, how it could be legal for any business to not offer callers an option other than voice responses, in particular, if one is unable to use their voice. Patients and people I have met with speech and voice impairments tell me how difficult, if not impossible, it is for them to call various businesses and respond to automated systems that do not recognize their poor speech or soft voice.

A recent customer service survey indicated that 94% of Americans find it "frustrating to call a company and get a recording instead of a human being." If we consider the fact that 75 million people have a voice disorder, I think it would be fair to say that among that group, 100% hate automated customer service lines.

So, today is another day. I still don't know the patient's eligibility for speech services, and given that today is a full moon, I am not sure if that bodes well for my giving this a second try. But, if you are reading this, and if you have a speech and/or voice problem that makes it difficult for you to use these sorts of automated systems, let your complaints be heard. The following comments refer to technology access by persons with any type of disability. To read more, follow the link below:

Although many businesses and government entities provide an option for callers to reach a live operator, often none is available. Where no operator is available, most consumers with disabilities are trapped in a process of trial and error and finally just give up.
Unfortunately, where automated response systems have a live operator option, they are only available if the caller is clever enough to get through a nearly impenetrable series of menu selections, rendering this service useless to those who need the operator the most. Indeed, public and private entities' collective goal of reducing caller dependence on costly paid telephone operators conflicts directly with their goal of providing access consistent with the mandate of Section 255.

http://affnet.ucp.org/ucp_generaldoc.cfm/1/8/11211/11211-11211/2206

Nagging, Fear, and Guilt, Rarely Cause A Change in Another Person's Behavior

noreply@blogger.com (Mary Spremulli, CCC-SLP) — Fri, 04 Nov 2011 21:54:00 +0000

One of the advantages of providing in-home speech, voice, and swallowing treatment, is that I am able to work with patients in a naturalistic environment, and observe them performing their home practice. Since there is usually a spouse or other family member observing and commenting on treatment, their presence provides numerous teaching and counseling moments. An observation I have often shared with a spouse, is that "nagging" is not a good therapy technique.Yet, I remember times when I fell victim to this with my own dad. Times when I chastised him for not performing his physical therapy exercises, warning: "do you want to keep falling?" his not drinking enough water, "do you want to get a urinary tract infection?"etc.,etc..

I do believe that nagging usually arises out of our genuine love and caring for another person, along with our desire for them to improve from, or not succumb to some disease. But, the truth of the matter is, all of these tactics typically result in an increased feeling of helplessness and diminished self esteem in an individual, who is already grappling with the symptoms and functional changes imposed by the disease.

Physicians and therapists can also be guilty of employing some of these fear tactics, particularly when treatment recommendations are based on their agenda rather than patient driven goals. "How can I help you be successful in reaching your goals?" is a question we should be asking every visit. And if or when a patient responds with the statement: "I don't think this is doing much good," they have provided important feedback regarding their own beliefs about their illness or their abilities, as well as an opportunity for further probing and goals clarification.

In the face of a progressive neurogenic disease, patients may fail to see the benefit of adhereing to proposed treatments, particularly when the end result is not a cure, or even a significant improvement in function, but rather a delay in symptom progression .

So, if fear tactics and guilt are not effective strategies for helping others follow through with treatment recommendations, including home practice programs, what might help?

Research suggests that patients ( potentially all of us) must believe that the recommendations for specific actions or steps for dealing with symptoms of an illness or improving any level of functioning, will actually make a difference, and, that they ( the patient) have what it takes ( mentally, physically, and emotionally) to carry out those steps. Patients with cognitive decline and memory problems, require a very personalized approach along with the use of treatment tools which will allow them to have some measure of self reliance and success. Videotaping a patient's treatment sessions can be a great method of improving adherence to practice. Once downloaded to the patient's computer, the session's instructions with live coaching, remain available as often as the patient desires or requires. Video-taping also provides a a visual documentation of change and improvement. Seeing and hearing oneself sound better can be emotionally satisfying with increased feelings of personal satisfaction and pride serving as motivation to continue.

Use Your Outside Voice!

noreply@blogger.com (Mary Spremulli, CCC-SLP) — Sat, 29 Oct 2011 22:12:00 +0000

I have been fascinated for some time by the fact that children are always noisy when they play, particularly outside. Yelling while running, screaming and jumping, put them in a swimming pool and the buoyancy of the water seems to make them even louder. Observe a baby moving, and it's nearly always accompanied by vocalizations.

Early in my career, while working in pediatrics, I obtained certification in an advanced therapeutic approach called: Neurodevelopmental Treatment (NDT). NDT was based on the work of the Bobaths, a husband and wife team, who developed the approach for the treatment of individuals with pathophysiology of the central nervous system, such as children with cerebral palsy, and adults following a stroke. The approach has evolved over the years incorporating new science, but it is still focused on treatment techniques which facilitate more normal movements.

As an NDT trained speech therapist, I gained skills and an understanding about how postures and movement were critical for the development of breath support and control for voice and swallowing. If this was true for the infant, I wondered, why not so for the adult?

What happens to us all on the way to adulthood? Why do we no longer use our voices when we move and play?

Since the creation of Voice Aerobics™ in 1999, I have been exploring ways to combine movement with voice practice. Not only can this provide more opportunities for practice of both throughout the day, but it is very possible that for some of you, your voice may infuse the movement with increased power, and likewise, the movement or gesture may add energy and volume to your voice.

Recently, I have been experimenting with a new idea. I call it: "Use Your Outside Voice." Yesterday, while providing a seminar to a Parkinson's Support Group, I called on one of the participants to" play" with me.

"Let's go to the dog park," I pretended. "Go catch the ball, Rusty," I said in a loud voice while gesturing the pitch of a ball. My volunteer participant, repeated the command in a not so loud voice and with arms silent alongside his body. "C'mon, I said, try it again." "Go catch the ball, Rusty," he said, this time, in a loud voice, with his right arm pitching an imaginary ball.
What dog would go fetch, I asked, if we were not enthusiastic and excited with our bodies and voice?

So, this is just a hunch I am playing with, but I invite you to try it out on your own. If you are someone with Parkinson's, and a voice that has grown too quiet, pretend you are at the dog park. Better yet, go visit the dog park, bring a few balls and treats, and USE YOUR OUTSIDE VOICE!

No Suffering, Victims, or Afflictions Allowed: Living Well With Parkinson's Disease is a well written book by Gretchen and Michael Church

noreply@blogger.com (Mary Spremulli, CCC-SLP) — Sun, 23 Oct 2011 14:57:00 +0000

Gretchen and Michael Church , authors and advocates, are a unique couple living here in SW Florida. I first met them one year ago while participating in a Parkinson's Disease conference in Ft Myers, Fl. They introduced themselves as a couple who both had a diagnosis of Young Onset Parkinson's Disease (YOPD), and as co founders of Movers and Shakers. I could tell at the time of our first meeting that there was not alot of "suffering" going on, but rather a tremendous amount of advocacy for themselves as well as others living with Parkinson's Disease (PD).

Gretchen and Michael are actively involved in the Parkinson's Action Network (PAN) in Florida, with a mission to inform, educate, and influence congressional leaders about the need for funding and support of research and programming for those affected by PD. ( approximately 1.5 million Americans and growing)

I am not sure when they found the time, but they have also written a book: Living Well With Parkinson's Disease...What Your Doctor Doesn't Tell You...That You Need to Know.

Judging from the day to day interactions I have with my own patients, I would say that there is lots people don't understand or know about their diagnosis or management of symptoms of PD.

As they say in their book's introduction: "this book is designed to give information on Parkinson's-related conditions, treatments, and procedures for your personal knowledge and to help you be a more informed consumer of medical and health related services." They more than fulfill their goal. From drugs, to exercise, to daily challenges, they have managed to include most anything I have ever heard discussed at a day long conference on Parkinson's Disease, with the added touch of their personal journeys.

If you or a loved one has a diagnosis of Parkinson's Disease, or, you are a health care professional working with individuals with PD, I strongly recommend this book. Unlike information that is heard at a conference, which can quickly be forgotten once home, with this book, you will be able to underline key ideas, write in the columns, and re-read for comprehension. Each chapter may also be a point of discussion for you and your family or for you with your physician/s.

A lead sentence from the PAN network website states: "Your voice is a powerful tool." Anyone that knows me or has met me, is well aware of my belief in that statement , a driving force for my own mission. Gretchen and Michael Church have voices worth listening to. For more information about Movers and Shakers go to:
http://www.pdoutreach.org/

Living Well With Parkinson's Disease is available wherever books are sold.

For more information about how you can be involved in state advocacy for PD go to:
http://www.parkinsonsaction.org/

My Mission: To enlist individuals in their treatment, and help them express their personality & spirit through voice. To educate and empower

Staying Alive: Parkinson's, Movement, and Voice

noreply@blogger.com (Mary Spremulli, CCC-SLP) — Mon, 17 Oct 2011 13:14:00 +0000

I have had the BeeGees song, Staying Alive, stuck in my brain since a dinner dance held Saturday night as a part of the Southeastern Parkinson's Disease Conference in Atlanta. The theme of this great weekend was truly about "staying alive," through learning about your disease, participating in activities you enjoy, and support from family and others living with Parkinson's.

I am always struck when speakers, who have never met before, create synchronicity for participants through their presentations. During my own Saturday morning presentation, I emphasized the benefit of coupling voice and movement as a strategy for voice strengthening throughout the day. Matt Ford, a physical therapist, discussed some of the research regarding music and exercise, and the beneficial effect of walking to a musical rhythm, and taking advantage of our innate ability to move to the beat.

Pamela Quinn, further reinforced ideas Matt and I had introduced, including the recommendation to keep moving by leading participants through great expressive movements set to various musical genres. Pam danced professionally for over 20 years with a ballet company in San Francisco before she was diagnosed with Parkinson's Disease at the age of 42. She is lithe in body and spirit and still moves with the grace of a dancer, providing great testimony to the effect of exercise on managing physical symptoms, and for overall well being.

I am so grateful and blessed to be invited to participate in these events for persons living with Parkinson's. I almost can't imagine meeting any more wonderful people than I have met.

I keep learning, laughing, and dancing on all of these weekends. Is it any wonder I want more. And, in my small way, I hope I have inspired a few people to engage in some type of voice practice daily, so that no other person is speaking for them, and so that they are staying alive!

ok, now, everyone ready?

Whether you're a brother
or whether you're a mother
you're stayin' alive, stayin' alive
Feel the city breakin
and everybody shakin'
and were stayin' alive, stayin' alive
Ah, ha, ha, ha, stayin' alive, stayin' alive
Ah, ha, ha, ha, stayin' alive

Listen here:
http://www.youtube.com/watch?v=_Vj092UgKwQ

Benefitting From Speech and Swallowing Exercises When Memory Is Impaired

noreply@blogger.com (Mary Spremulli, CCC-SLP) — Fri, 07 Oct 2011 14:45:00 +0000

Last week I evaluated two patients with a medical diagnosis of Parkinson's Disease, who also exhibit some dementia which includes short term memory problems . Both patients were aware of changes in their speech and voice, and both acknowledged some occasional swallowing difficulty related to their disease, but neither could verbalize what they would hope to gain from treatment. Their spouses sat nearby, looking somewhat anxious, recognizing that without some treatment, both communication and swallowing would decline further.

For one of the patients, with nearly inaudible speech, I offered amplification as as a short term solution during our time together, with a suggestion that he and his wife consider this as a long term option for improving communication on a day to day basis. Once I was able to hear him and he was able to participate more fully in the evaluation he revealed his wit , his insights about his Parkinson's as well as some of his concerns regarding declining function due to his disease. Next visit, I will introduce the Voice Aerobics audio CD to determine if he is able to follow the cues and to determine if it yields some better voice for him. Because it is a guided program, there will be nothing for him to remember, reducing the need for his spouse to instruct, or as often feels to him, to "nag".

For the second patient, with rather significant swallowing problems, I knew that instruction in specific strategies and some exercises were warranted. Once I determined that she was able to follow verbal instructions, I began to explore various options for helping her perform these exercises on her own at home, or at least with minimal supervision by her husband. We decided that video-taped instruction will work best for her. I often video-tape patients performing a set of prescribed exercises and download it to their home computer. Watching oneself seems to appeal to many patients, and the video recorded instructions are available after therapy for as long as the patient is willing to practice.

Mild dementia with memory loss does not need to preclude the ability for individuals to achieve benefit from exercise for voice and swallowing. However, my experience has taught me that written instructions are rarely carried out, and that recorded programs introduced early in treatment can provide training in a program that can be easily performed daily at home, offering the best chance for continued practice.

I am always impressed with the support from spouses to constantly be seeking new ways to help their loved ones. But I also know that weekly visits to doctors and therapists along with caretaking duties at home can take its toll. If for 30 minutes once a day, the patient can independently perform their own exercises, the spouse or carepartner is unburdened from another task, and hopefully the patient enriched with a greater sense of independence and self-esteem.

MSA World Day: Light A Candle and Say A Prayer

noreply@blogger.com (Mary Spremulli, CCC-SLP) — Mon, 03 Oct 2011 15:52:00 +0000

MSA (Multiple System Atrophy) is one of those diseases, categorized under “rare diseases.” Despite its rarity, I have had 3 patients in the last year with this diagnosis. As a therapist, it has saddened me to see vibrant people struggle with a decline in function, which usually includes speech and swallowing, and for which treatment can offer modest improvement.

Worldwide MSA action day is today, the 3rd of October, all day long.

To raise awareness and work towards a cure, you are asked to light a candle at 20:00 hrs / 8:00 p.m. for one hour local time

When we light the candle, we say a prayer. We leave the candle behind burning as a testament to our prayer for another person (either alive or deceased). It serves as a reminder to all who look upon it to pray for those that are in need.

The population of the Earth is estimated to be 6,952,785,870 (as of August 1,
2011). This means that statistically we can estimate that worldwide 347.635*
people may be affected with MSA at this time. (*5 cases per 100,000)
We want to have a candle lit for everyone that may be affected with MSA and for all those loved ones who have lost their battle in the past.

You can light your candle at home alone, or with friends and family, or during
your local activity that is planned for World MSA Day. As candles are lit around the globe, a virtual 24-hour wave of light will be created as it moves from time zone to time zone.

To learn more:
http://www.world-msa-day.org/World-MSA-Day/HOME.html

Communicating With Your Partner When Speaking Is Difficult

noreply@blogger.com (Mary Spremulli, CCC-SLP) — Sat, 01 Oct 2011 13:25:00 +0000

Recently, I was evaluating a patient with speech and voice changes from Progressive Supranuclear Palsy (PSP). During the history taking, his wife stated: "I wish he would communicate more." When I asked the patient to comment on his wife's statement, he said: "we've been married for twenty-five years, it's all been said." I saw sadness, or perhaps it was resentment, wash over his wife's face. Her choice of the word "communicate" made me think that she was looking for more than just idle chatter. It appeared, from observing their interaction, that she was longing for her husband to communicate interest. Interest in life, his health, his safety, his friends, and, perhaps most of all, in her. She also seemed to need relief from a daily habit of instructing, mothering, and "nagging," to one of partnering and self-nurturing.

Ironically, in the same week I evaluated a younger, female patient with a diagnosis of Multiple Sclerosis (MS). Her husband sat in on the interview and expressed a similar desire for more communication. He verbalized frustration that his wife no longer spoke to him in complete sentences, but rather, abbreviated her thoughts and comments to short, telegraphic phrases. Noting her mildly slurred speech and reduced breath support, it occurred to me that her saying less was her way of conserving muscle energy and reducing fatigue. To her husband, however, her growing silence was viewed as as some rejection of him. He didn't seem to understand that the pause in her thinking was just that, and his rushing to finish her thought did not really help her.

Communication between couples is complex and certainly beyond the scope of this blog post. Communication between couples, when one has a communication impairment can be especially difficult. And, as you can see from my two examples above, does not seem to be gender specific. Sharing physical space with someone who, because of a physical or cognitive impairment can no longer communicate well, can introduce an emotional void into a relationship unless couples can discover other ways to be in communion with one another.

This might include non verbal activities like dancing, or painting, or listening to music together. Maintaining family connections and other social networks of course is also important. And,some days, perhaps just adopting the wisdom of various self-help programs which teach:

One day at a time
Go for being happy over being right
Don't make mountains out of molehills
and one that is particularly hard for me....ask for help when you feel in over your head

Post Polio Survivors: Role Models of Overcoming Adversity

noreply@blogger.com (Mary Spremulli, CCC-SLP) — Mon, 26 Sep 2011 16:01:00 +0000

Saturday, September 24, 2011, was the 25th anniversary of the Post Polio Support Group of Maine, and I was honored to be an invited speaker at the celebration. Upon my arrival, Ann Crocker, one of the meeting organizers said: "there's not too many of us left." She was referring to the fact that many polio survivors who were children or young adults in the late 1940's and 50's when the polio epidemic struck the United States, are now in their late 60's and 70's. Many of these individuals have lived a life time with mild to moderate disability resulting from the intitial experience with polio, and now face some further decline in physical function as a consequence of age related changes as well as what are referred to as "late effect polio" or post-polio syndrome. (PPS)

Post Polio Syndrome typically refers to problems which emerge many years after contracting the original virus, and may include symptoms such as: fatigue, pains in muscles and joints, and new muscle weakness. Muscle weakness can include the respiratory and bulbar system ( head and neck) with a subsequent affect on voice and swallowing. I discussed some of these changes with attendees, advising they report any decline in voice and swallowing to their physician, and request a consult with a qualified speech-language pathologist for further evaluation and instruction in exercises or techniques which may reduce symptom impact.

I can remember, lining up outside the local high school when I was a child to receive my sugar cube of prevention against the polio virus, but my first introduction to life after polio came at the age of 16, when I responded to an advertisement in the newspaper to care for a disabled woman. Susan Armbrecht was in her mid 20's when I met her, but she was no larger than the size of a child, her skeletal muscles having been halted in growth at the age of 6yrs when she contracted the polio virus. The first night of sleep at Susan's house, resulted in no sleep, as I listened to the "woosh" of her iron lung, and responded to her periodic calling me for a position change. I lay there that night, strategizing about how I could ease out of this newly formed agreement. But, after a few more weekends with Susan, her spirit and enthusiasm for life had overtaken me, and we began a life-long friendship, until her passing a couple of years ago, just shy of her 70th birthday. It was through Susan that I had the honor of meeting Gini Laurie, the founder of the Toomey Gazette, later named the Rehabilitation Gazette, and predecessor of Post Polio Health International. Gini is also credited as being one of the originators of the Independent Living Movement, a movement which raised consciousness about what it means to be a person living with a disability, helping to banish words such as: "crippled", and fostering the notion that a person living with a disability is best positioned to inform the non-disabled about what they need to live life fully.

Gini Laurie also articulated what polio survivors needed saying: "it was apparent they had two vital needs: people and information. They wanted to keep [up] with each other , and wanted to share information about their lives and equipment."

This past weekend's conference affirmed that these two vital needs are still relevent and being provided for by support groups, like the one in Maine. I hope that I contributed to the participant's learning needs with the information and education I provided, but, as is often the case anymore, I feel that I left the meeting also enriched by my interraction with the group members.

Since returning home, I have been thinking alot about two life-long friends affected by polio, Susan and my friend Mickie McGraw, a nationally known art therapist, both who lived and live life with zest. I am thinking that their zest for life is also a result of having survived a catastrophic illness, because I heard it reflected in the voices and stories from a few of Saturday's attendees. Howard, who despite loss of neck and shoulder muscles on the right side of his body, went on to join the military, and proudly told me how he managed to carry his rifle. Reggie whose big heart was evident and practically bursting our of his shirt as he introduced a Maine legislator and her proclamation.

Many of the people in attendance have compensated most of their lives for weakness or muscle loss in one part of their body or another. But what I did not hear was one murmur of self-pity. Maybe it was the post-war timing of the illness or the fact that many were young children, but all seemed to have just gotten on with their lives. The effect, and now late effect of polio is certainly relevent, but for most it seems to have been integrated as a part of their descriptive adjectives, like tall or short, but not the defining one.

The motto of the polio surviviors is: "we're still here". I felt and saw that clearly on Saturday. Not only are they here, but they give witness to the fact that people can have full lives, lives which might include varying levels of disability, but they do not need to be defined by it.

For more information about Post Polio Health, please visit:

http://www.post-polio.org/

Parkinson's And Your Voice: I Can't Get No Satisfaction

noreply@blogger.com (Mary Spremulli, CCC-SLP) — Sun, 11 Sep 2011 17:11:00 +0000

I can't get no satisfaction
I can't get no satisfaction
'Cause I try and I try and I try and I try
I can't get no, I can't get no

I Can't Get No) Satisfaction lyricsSongwriters: Jagger, Mick; Richards, Keith;

Have you sometimes felt dissatisfied after leaving therapy? Voice sounds great while you're with the therapist, and minutes later while conversing with your spouse, the chorus begins: "What did you say?"

From your spouse's point of view, who minutes ago heard you speaking louder and clearer, it may now appear that you are: " just not trying hard enough," "you're lazy", "you're not motivated," or the assortment of other complaints I often hear. In the meantime, you hang your head in shame and semi-resolve that maybe you can't make these changes that are being demanded of you, and whisper: "I'll try".

So why is it so hard to retain the improvements in speech and voice when on your own?

There is probably no one answer that fits everyone, but a few possibilities include: you can't remember what to do, you can't focus on your speech and your thoughts at the same time, it doesn't feel natural to be speaking differently than you are now accustomed, you haven't yet created a new habit, and so on. Thirty days of voice treatment may simply not be enough time to change a voice habit that has been established over several years, and that is now shaped by a voice instrument not so easily played.

One of the biggest hurdles for most of my patients with voice changes from Parkinson's disease is making the transition from a treatment/therapy setting to everyday use of their voice. The same patient who can register 80dB on the sound level meter when in treatment, may barely be heard above the background noise of the car engine on the drive home.

I often tell me patients that voice practice is like going to the driving range to improve your golf game. It may help you to hit the ball harder and further, but if you never actually get on a golf course and play, you will never really be able to master the varying terrain and obstacles of a golf course. Similarly, if you diligently do your 30 minutes or so of voice practice every morning after breakfast while sitting at the kitchen table, but then don't talk again until dinner, it is unlikely that you will implement the change you desire.

Daily communication takes us over many varying terrain. We converse with familiar and unfamiliar people, in quiet and noisy environments, in settings where we may feel hurried or pressured to speak, on cell phones, in the car, and some of us, even in our sleep! Before your diagnosis of Parkinson's and before you developed changes in your voice and speech you likely never gave much thought to all of this. Your voice, like the rest of your body was operating in automatic mode, and you easily made those shifts in voice from conversational with your friends, to loud at the ballpark, and quiet in the movie theatre.

Creating daily opportunities to converse with familiar and unfamiliar people in an out of your home is going to be an important aspect of your overall improvement. All the speech therapy in the world will be of little benefit if you sit home watching TV all day. Joining a group that centers around an interest you may have, such as photography or bridge may help you stay motivated. Even walking around the mall, talking to various retail personnel will provide you with real world practice.

Upon completion of voice therapy , a patient of mine asked: "do I have to keep doing these exercises forever?" My short answer, "yes". As long as Parkinson's is lurking around in the background of your life, you must continue to do some daily voice practice, but, more importantly, stay engaged in life by communicating with those around you.